I am 21 years old and a college student just trying to survive my everyday life with Chiari Malformation, Ehlers Danlos Syndrome, Intracranial Hypertension, Mast Cell Activation Disorder, POTS, Tethered Cord, Gastroparesis, and Interstitial Cystitis.

Wednesday, January 25, 2012

Do`s and Dont`s

PLEASE...
-Don`t assume that I am feeling well, because I look good. I almost always look good, but feel terrible.
-Don`t tell me you know how I feel UNLESS you have a Chiari too. Yes, I know lots of diseases cause pain but everyones pain differs with each illness or disease.
-Don`t tell me I can`t do something, because that just makes me want to do it more. If I choose to do it and hurt later, then thats my problem.
-Don`t feel bad that you can not take the pain away. I was given this because God knew I could handle it. :)
-Don`t ask me how I feel unless you want the truth and a long story to go with it.
-Don`t assume that because I did a certain activity today that I can do it tomorrow.
-Don`t be upset if it takes me longer or I say something wrong. Chiari makes you think slower and gets your words jumbled up.
-Do know that I have learned everything possible about this disease to help myself and to help other Chiarians.
-Do offer to help me.
-Do realize that if I am having a bad Chiari day that I am not upset with you, that I am frustrated with the disease.
-Do PRAY and offer me lots of encouragement.
-Do hug me gently.
-Do understand when I have to cancel plans with you at the last minute that I never know how I am going to feel when I make the plans.
-Do understand that if I say I need to lie down or take medicine, it probably means I must do it now.
-Do understand that Chiari is very difficult to live with.

4 comments:

I love that you can define your needs and wants and not fear putting them out there. Good for you! Do know that the people who love you will try to remember these things but they too will sometimes do or say the wrong thing out of helplessness. It's a dance everyone must learn.

I love this! My daughter Ali 4 years has Chiari. I find her feeling some of these that you have listed and us sometimes having to cancel with friends last minute b/c she's not feeling well. I find myself struggling to explain this disease to people when they ask, and wonder sometimes if they really want to understand. You are a bright girl Emily and you have inspired me. And if you have inspired just one person then you have accomplished something in my eyes(which doesn't mean much)lol I'm not famous neither is my daughter. We are just regular people living with this disease and trying to create awareness and that is by far way more important then anything.

I'm sure it is hard for her to express how she is feeling since she's only 4. It is hard for me setimes and I'm almost 18. I hope my blog and journey will give you some hope, answers, and support. I am also writing a book that I hope to someday have finished. Best of luck with everything!Thanks for reading my blog!Emily

I am 19 years old and I have had 12 surgeries. I have Chiari Malformation, Ehlers Danlos Syndrome, Tethered Cord, Inter Cranial Hypertension, Mast cell Activation Disorder, Interstitial Cystitis, POTS, Chronic acute Mono and Cranial Vertebral Instability. I was granted a Make-A-Wish trip in December 2012. I have an amazing support system and the best docors around. Ask me any questions or give me any advice you may have.